Ben Chapman, our web administrator, has been working on a RETT FORUM for parents and friends of Rett Families to communicate with each other. Click here to join the chat with other parents, teachers and doctors in a safe environment to discuss ideas, worries and good news stories together. You must register to use the forum, but your username and password should be remembered, making it easy to get back in. (You can also get to the forums by going to www.nzordforums.org.nz in your web browser. This page has more details on how to use the forums.)

Other groups will probably develop their own with our model so it is good for Rett Families to be technology leaders. One day our daughters may be able to join us using their eyes to point and make their own contribution. This technique is being used in the States and we are keen to learn more about it.

Being able to express one’s self is such a relief, we can imagine how the girls must feel when we seem slow to pick up their messages or interpret them wrongly.

Rob and Megan Pakes have been busy fundraising so parents can get together and meet each other. They have booked Rydges Hotel in Rotorua where one of their friends is supporting a fund raising dinner in honour of Rett Families. Mike McRoberts is going to be the compere and already there are some interesting items to auction. Please email Rob and Megan a photo of your daughter for the presentation he is going to make, rpakes@tollnz.co.nz. There are more details at this page [page is now down].

The Pakes Family felt very despondent over the Christmas Holidays when Alysha was suffering from seizure activity. The staff at Tauranga Hospital felt her future would be very difficult. We all know the sinking feeling in the pit of one’s stomach that one may be on a long hard grind. Rob and Megan fundraised to go to the Rett Conference in San Francisco where they learnt more about seizure control and met parents who were so positive about the struggle the girls make. Through the new group of parents and speakers they learnt about the life changing attitudes families develop when learning from those who have to struggle to enjoy life but get so much pleasure from being in this world. Rob and Megan came home determined to organize an event where parents can get together to share ideas and to have the great family feeling from those who understand.

Megan said the best lecture she went to was one on seizures where putting a brown paper bag over the mouth stops some of the hyperventilating that leads to seizures. Talking about seizures reminds me of an article I read by a neurologist from Melbourne who has found high fat, medium protein and low carbohydrate diets help control difficult seizures. Many books refer to it as a ketogenic diet.

For those of you who can come to the dinner in Rotorua at RYDGES HOTEL at 6.30 pm I will look forward to seeing you there. For the others we will work toward getting together in 2007 to renew acquaintance and to make new friends.

Our grateful thanks to RYDGES and all the kind people who are donating services. The Band has offered to play as a gift to Rett Families. We are touched by their kindness and their love to us.

I felt so sad to receive an email from Norrie Knight the Father of Joanne to say she had died recently at the age of thirty six years. She had had pneumonia and a very bad seizure. Our thoughts are with her family. We still remember her from the happy time we all spent in Christchurch all those years ago.

It is such a difficult time for families when one has spent so much extra time worrying about our girls, there is such a gap when we do not have the same anxiety although we know they have found some peace from their great determination to enjoy life in spite of the difficulties that they have had to face. They teach us so much each day about the value of life, of kindness and the warmth of a big happy smile.

Photos from the Pakes' trip to San Francisco